All- My mother (75) for about a year now has been having Good days and bad days. She has had basically every test known to man, long story, and they said they thought her thyroid was borderline hyper so they sent her to a specialist. He did blood work, which we are still trying to get a copies of all the tests and an uptake scan etc. At the end of it he stated she was still "Borderline Hyperthyroidism" and the only treatments he will offer her is surgery to remove her thyroid, radiation to kill it or in his own words, "Do nothing and you will either have a heart attack or stroke". Needless to say he is a complete and utter condescending know it all. He gave her less than a month to decide and when we went back in she had some questions. Well I guess that was a no, no as he pretty much went on a rant and ushered us out the door stating when we make the wise decision to bow to his almighty opinion unmatched knowledge and decide to kill her thyroid to get another referral back to him and he will do it. In my mothers 75 years, she has never been on any medication other than an aspirin for a headache or her cod liver oil, as she is allergic to a lot of medication and never taken any in the past. So she is scared that she could be allergic to the replacement medication and if she is what then ? She has no thyroid.. what the heck would happen ? Anyway, I was able to get a couple of copies of her blood work, but on is from Oct 2017 and Oct 2018,
Oct 2017 -----TSH 0.14 L (0.35-5.50 mu/l) T4 14.6 (10-28.2 pmol/L)
May 2018 -----TSH 0.28 L (0.35-5.50 mu/l) T4 15.0 (10-28.2 pmol/L) T3 5.8 (4.3 -8.1pmol/L)
She is at her wits end trying to decide if she should go through with it. Would love to have your thought and opinions and any suggestions . Also on a side note - anyone know if by taking cod liver oil daily could have adverse effects or could contribute to her borderline hyper ? Thanks again !!! Also - almost forgot - when they were trying to figure out what was wrong, the first test they said she had low sodium and the second one she had low cortisol.
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In short, no - I wouldn’t go for thyroid removal. There’s nothing in those blood test results that shows hyperthyroidism. TSH is low - but that could indicate a pituitary problem rather than hyperthyroidism, given FT3 and FT4 aren’t over-range.
Low cortisol and low sodium are symptoms of Addison’s Disease - has she been tested for that? If not, it needs looking into.
And I think a second opinion is definitely required on the thyroid issue. You really do need to see those blood test results - are you in the UK? If so, they can’t refuse to let your mother see them - it’s against the law.
When she went to Emerg she had a really nice young Doctor that sent her for those blood tests that showed the low sodium and low cortisol, and said it could be her adrenals. But then he referred her to see the "endo specialist" we tried to question the "endo specialist" on it and he didn't want to hear it. He is a specialist and he has had 30 years of diagnosing and treating thousands of patience successfully and even practiced in France. I don't care if he practices in space, I just want her to find out what is wrong and get the right diagnosis.
We went early this week to get a copy of all her records, as one minute she had a blood clot went through panic and hell, I researched before she went for scans and when I seen hers I told her she did not have it, then they finally came clean saying they screwed up. Then her heart is great with regular plaque for her age but she had high blood pressure which she did not and now the " endo specialist" said she had angina, which never ever came from the Cardiac specialist mouth, to the "endo specialist" then changing his tune once I vehemently denied that was ever told us to the next visit to say.. well this hyper thyroid will lead to it and a heart attack and stroke. Then on the last visit we went when he was really ride he said she had hyper, then when we kept questioning he said "well she have graves too".
They are a special bunch of stupid here in Canada, so much for "free health care". The Doctors here are pill pushers because they get kick backs, give the wrong medication to patients and misdiagnose others,and have no bedside manners and just want you to do what they say and shut up and do not question them, if you do they pretty much blacklist you.
It is pretty scary, we have no faith in our healthcare system after what our family has seen. I just feel bad for those that do not have family that sit by the bedside and go to appointments with them to catch all the mistakes made by them or do not question anything. I get they are only human but for life and death matters there should be more than just one doctor analyzing the results. Plus they never have to face any consequences and I cringe at the thought of how many people may have died because of negligence and no one will ever know.
We had research Addision when she fist went in, but will do it again. You have no idea how much I appreciate finding this forum and for you taking your time for responding with your opinion.
She's not borderline hyper, that's bull sh*t. Her TSH is slightly lower than the range, but her Frees aren't even mid-range. The man doesn't know what he's talking about. How dare he scare an old lady like that! She looks perfectly euthyroid to me. But, she should have her antibodies tested. Did she have any antibodies tested? I don't think she should make any decisions until she's seen all her test results. She's supposed to make an informed decision. How can she do that if nothing is explained to her? I'd tell him, in no uncertain terms, to take a hike! (And I'm 73!)
As for the cod liver oil :
Cod liver oil. The bioavailable vitamin A in cod liver oil is especially supportive of healthy thyroid function, because the thyroid depends on plenty of natural vitamin
Thanks Grey goose, I have been researching last night and today as it is the first time we ever seen any actual test result levels. When the blood tests came in or any scan tests, they never show you, they pull them up on computer screens and pretty much hides them from you and do not tell you the figures, and just tell you what is what, so how do you know unless you see them. Which is why for any of the scans I would research before we went and I would go with her if I could. The last "uptake " test, they would not let me go in but they mistakenly left the door open and I could see the screen, which is why I am questioning this diagnosis as the screen I seen of the thyroid, looked like a normal thyroid. not dark spots or pixilation and no abnormalities so I could not understand when we went the last time he said she was still hyper. The radiologist even caught me at one point spying, she shut the door but not enough and I could still see.
I could not research her results until we had a copy and when we went to see the nurse practitioner, we asked for a copy and she only gave me the two I posted and we would have to pay to get her full file, which we are in a process of.
Thank you for your help, it is sincerely appreciated !
You're in the UK, aren't you? Since May, you don't have to pay anymore. She has a legal right to her results free of charge and if they quibble, they are breaking the law and there are measures she can take to force them to give you the copies. Sounds to me like they have made a mistake and now would rather take her thyroid out than back down!
No we are in Canada We have requested a copy of all her files. Unfortunately here you can get them but you have to pay $0.25 per copy. Crazy I know, but that is how they do it, I am wondering now if it is to deter people from requesting a copy of their files. I tend to agree with you, because they would be caught with their "pants down" again with my mother's health. I think that why he tried to be so intimidating and rude towards my mother trying to make her sound stupid for even questioning his diagnosis, and asking for alternative treatments other than killing her thyroid. But she and I are a lot alike, we are silent little lambs with a tough hide that takes a lot of hits for a long time until we snap.
I agree 100% ! I am not sure why they took an oath to begin with or if they hate their profession so much they should look elsewhere. It is like they treat every patient as a guinea pig. I completely understand how hard it may be to find the right diagnosis, but I am confused as to why they do not confer with other colleagues to come up with ideas on other suggestions or test that may lead to answers. Instead, they just expect everyone to take them at their word as they never make any mistakes and pin the first thing they can think of as the problem.
The end result, too many people taking way to many drugs which feeds their pockets but leads to complications in their patients which they never accept responsibility for or held accountable for. When you go in to see them and they ask you what medication you are on and you say none, they look at you like a dear caught in the headlights. They can't understand why you are not taking any medications, as if you are supposed to even though you are healthy.
Your consultant doesn’t sound very impressive at all. I would tell my GP I wanted a second opinion. If you are in the U.K. I would contact TUK our sister site and find a patient friendly endocrinologist and go from there.
Sorry just seen you are in Canada! There must be s9me sort of thyroid patients group who could advise you though.
Like GG says her results aren’t really that low. I would want to follow up on her low sodium and low cortisol.
What are her symptoms and what does she call a ‘bad day’? As her thyroid results aren’t all that low it doesn’t have to be thyroid that’s caus8ng her bad days.
What are her vitamins D and B12, ferritin and folate like? All of these need to be well up within their ranges to support her thyroid.
Why does this guy think the only option is to kill off your mother’s thyroid? I think your mother is quite right to want to hang on to her thyroid. My worry when I was told that should my Graves’ disease come back I would be given radioactive iodine to kill it off was that my doctors wouldn’t be able to give me enough T4 or an alternative treatment should T4 not be the best treatment for my body so even though I have no allergies to medicines i I can see why your mother is concerned.
He is not let me tell you, I am sure you all would have went aboard him Unfortunately here you have to have a family doctor to refer you unless you get a kind doctor like my mother had when he followed up from emerg, and the waiting list is long, like 5-10 years. She had a few family doctors, but they either changed professions or moved out of the area. So they never assigned her a new one. We are looking for a new one currently. On top of that there are two hospitals, an English one and a French one, if your doctor is affiliated with one of those, you can only be referred to the "specialist" at that affiliated hospital, even though they are like a 5 minute drive apart. So, the nice emerg doctor is affiliated with the French hospital and the only endo there is this clown.
I guess this really started back in 2010, she had a family GP at that time that sent her
for blood tests as she was always cold but felt ok other than that. One blood test came back ok, the next one was not and her DR. thought it was her thyroid and was going to monitor it but wanted to send her for some tests. She went for a scan of her neck and within a couple of days, the DR. called panicked and stated she had to go to emerg as she had a blood clot and if she didn't she would die. So obviously, we went, they put her on warifin and was supposed to go for blood tests on a weekly basis to monitor it. Within a couple of days Mom called them and said she could not take it anymore as she was in severe pain which she never had before. The Dr. said you can't and Mom said she could. So they sent her for another scan to check the "clot", this time I was allowed in the room and again researched the night before. There was not freaking clot, I told her. So she was called in a few days later and her Dr said it "mysteriously went away". Needless to say it was complete and utter BS. They finally came clean (which they never ever do) but I think they were scared we might go to the media. We were just happy she did not have one, but was also pissed what they put her through. Then fast forward 4 years and she did not feel well and thought she was having a heart attack, she went to emerg, they monitored her and transferred her to a bigger hospital where they gave her a stress test, did a ton of scans, etc and monitored her for almost a week in the hospital. The results of her "heart" tests and all the other tests were good no heart damage, but obviously plaque for her age and they are not sure what caused it but it was not a heart attack. But what was strange is he tried to put her on highblood pressure medicine, but she did not have highblood pressure as everytime the nurse tested it, we also recorded the numbers, only for the first day when she thought she was having a heart attack. So there is always a running joke " There was a sale on highblood pressure medicine) Then he said ok, if you won't take that they at least take a cholesterol pill, but all her tests were fine..and even had her take home a heart monitor, like what the hell. Anyway, she was doing ok, other than being cold, and now in the winter she finds it hard to go outside as it is like the cold air takes her breath away. She has told the doctors this and they have no clue what could cause it. Fast forward again to July of last year and she had another episode where she thought she was having another heart attack. They took her by ambulance, they checked everything out and her tests were identical to what they were 4 years ago nothing changed. This puzzled the young doctor, so he sent her for more blood tests and that is when he found low sodium and low cortisol, and then the referral to the clown.
I have asked her to explain her symptoms multiple times and she says it is hard to explain. The bad days she knows as soon as her feet hit the floor. She says it is usually only in the morning and it is like she doesn't feel like herself, brain fog, weak and no energy at all. Also, when she eats in the morning she sometimes gets nauseous but has some ginger and feels a bit better. She says she usually has like one good day and then two bad days, then it repeats. Since she has been eating more salt, she does not get light headed as she did last summer. She has always eaten healthy, doesn't drink. She does smoke, but she rolls her own and never really smoke that much, no way near a pack a day, maybe 8 per day. She has also been staying away from gluten for years as it makes her bloat and gives her a lot of pain around her back, until she passes it.
Sorry for being so long winded, but trying to figure out what is causing this as he doctors here don't seem to care and just try to dope you up or kill things in your body.
May 2018 -----TSH 0.28 L (0.35-5.50 mu/l) T4 15.0 (10-28.2 pmol/L) T3 5.8 (4.3 -8.1pmol/L)
The T4 and T3 figures, I'm guessing, are Free T4 and Free T3. But you need to check to be sure. The Uptake test is a useless test, and is no longer done by most up-to-date doctors. I've never heard of it being done any more in the UK at all. Total T3 and Total T4 are rarely helpful either. It is definitely Free T4 and Free T3 that people need testing.
So, assuming your mother's results are for Free T4 and Free T3...
Free T4 is 27% of the way through the range.
Free T3 is 39% of the way through the range.
In someone who is hyperthyroid you would not see results this low. Instead you would see results which were right at the top of the range or over the range, particularly for Free T3.
Doctors look at TSH and think it is a perfect indicator of all things thyroid-related. This is not true. Free T3 is the best indicator of thyroid-related health. But they've been brainwashed for years to believe that "thyroid is simple - just look at the TSH". They've also been brainwashed to believe that Free T3 tells them nothing on the basis that it is too variable - which might be true in someone who is taking T3 as a treatment and who tests at random times, but is not true in someone who doesn't take any thyroid medications of any type. TSH varies more than Free T3 does.
Note : In the above paper Free Triiodothyronine is another name for Free T3
In hyperthyroidism it is not low TSH that causes problems, it is excessive Free T3. And in hypothyroidism it is not excessive TSH that causes problems it is too little Free T3.
Based on the other things that you've said, I agree with the others who've said that your mother needs testing done for Addison's Disease and low cortisol. A very good article on the subject can be found here :
I think your mother needs to find some other doctors. Because the ones she's been seeing sound like a bunch of absolute duffers. Remember the old joke :
Question : What do you call the student who comes last in their graduating class for medicine?
Thank you so much for the info. I can't wait to get her file so I can go through it with a fine tooth comb to see what all her tests results were. Unfortunately on two papers they gave me they just show T4 and T3, so god knows what they tested. I am so glad I found this forum, I know the UK is so much farther advanced in medicine than here. As you mentioned they still do the uptake here, so they did give her a low dose of radiation already. Thank you for the explanation, we tried to ask the "clown" and he would not go into detail, treated us as if we were dumb, which we are far from, which he did not appreciate I am trying to get her to seen that nice young dr again as he is the one that followed up the last time and although we don't know him well, he seemed like he cared as he called her personally. Sad part is, he does not have a private practice, so we went into emerg on Friday as they receptionist said we would have to go everyday to see if he is working, if he is we have to wait in emerg to see him. So when we went on Friday the nurse said, well you can wait, but you could be here for days because it is not considered an emergency, yet I guess someone with a sniffle would be take before my Mom, even though we were there for hours.
But I have been researching Addison since you guys mentioned it, and I tend to agree. Which my mother and I really thought in the beginning it was when we were researching her symptoms, but like I said as soon as we brought up low cortisol the "clown" dismissed it and only focused on her thyroid. Apparently here in Canada they do not acknowledge "adrenals" in the endo world.
For almost all her life she has stressed about multiple family members, helping them out, driving them places, looking after them etc... I think she was always in the "fight or flight" mode.
Thank you so much for all your help, reading the article now.
Well, she doesn't look borderline hyper to any sane person, not with those FT4 and FT3 results. Could be borderline central HYPO - low TSH, low FT4, low/normal FT3, caused by a problem with the pituitary gland or hypothalamus - or the end of a Hashi flare (can't tell if antibodies were not tested). Something is stopping TSH from rising to the levels you'd expect with those Frees. The last thing you want to do it remove or kill the thyroid, esp if she is elderly, as any surgery or nasty procedures should be avoided if possible. She won't have a stroke or heart attack because of her thyroid with those results (can't speak for other reasons). However, I would want to make sure that she has optimal vit D, B12 and folate - things that are often neglected in the elderly and are caused by living on tea and biscuits and ready meals indoors (among other things) which a lot of elderly people do if they haven't the energy for anything else. Cod liver oil is not the best way of getting vit D a) because cod is high up the food chain and eats lots of little fish with mercury in them b) because it's easy to get too much vit A. She needs vit K2 for arterial/brain calcification if she is taking vit D or cod liver oil
Thank you for the information Angel. It is kind of funny as I do not consider my mother "elderly" (although I know it is the proper term for her age bracket) She can still run circles around me on her "bad days". I have always said, they do not make them like they used to! She is always up at "crow piss" and stays up until midnight. She always jokes as her older brother and sister and her younger brother always takes naps now and she never has. She has always eaten healthy, I have always joked when we go in to see a doctor, she is healthier than I am. However as you mentioned above, I am not sure if she has been tested for Vitamin D or folic, although I know she did try taking B12 as a supplement last year but it gave her migraines so she stopped as that was the only thing she took differently. I will let her know about the K2.
I think I'm "elderly" now, too. It's really the attitude of the medical profession - they treat everyone, but especially older people, as if they were all mentally deficient (used to really annoy me as my mum had more academic qualifications than the GP, but he still talked down to her). B12 is usually linked to migraine _prevention_, and deficiency is a probable cause, so I'd look at that again and make sure that, if she takes it, it is sublingual methylcobalamin, and that she is getting enough magnesium.
As a person who is hyperthyroid I advise you to please look at: elaine-moore.com. Elaine is a wonderful, trustworthy person who will advise on your Mum's results based on her own experience and that of hundreds who have consulted her. I have found her advice so helpful over the past 4 years.
I know you haven’t asked but I’ll throw in my hyper symptoms for good measure. I hadn’t felt 100% for ages, I was always getting vague symptoms even things like constant sinusitis - which disappeared once I was treated. I lost weight - masses of weight. My heart pounded all the time - you could feel my pulse just by putting you hand on my stomach, I felt like I was going to have a heart attack. The muscles in my thighs lost all power - if I got down on the ground for any reason I had to be helped up again - I thought that was because my back pack was too heavy. I had the worlds most shaky hands, such an enormous tremor. I was a nervous wreck - we drove to the south of France with me sucking on Dr Bach’s Rescue Remedy gums or spraying the stuff in my mouth. I was so jumpy - glad I wasn’t my passenger. The thing was I saw a doctor a couple of days before I left because I felt so ill and she just leaned back in her chair and looked at me in a puzzled fashion like I’d crawled out from under a rock and then she told me that I ‘needed my holiday’.
I was so cross I was almost in tears when I got back to the car and told my husband that the doctor clearly thought I was a hypochondriac. So we went away for theee weeks. A couple of weeks after I got back I nearly killed myself in the car - it was dark and I was crossing a junction that was partially obscured by bushes and a car came roaring up after I had started to cross - not a sign of him before I stared but it was a dual carriageway and he was probably doing about 90mph.
The adrenaline rush from the shock of it all was something else and I felt so bad I went to a different doctor the next day. She took a look at me, did all the stuff you would do to diagnose Graves Disease which is hyper with antibodies. That was on a Wednesday, on the Thursday I had blood tests done and on the Friday I found a message in my house phone to say I had a very overactive thyroid with antibodies and that she had left a prescription for carbimazole at reception, had made an appointment for me with an endo and would I come back for another blood test in four weeks.My first test results were
I mentioned to one endo I saw that my tag was 0.03 and she said it would have been way lower than that - that was as low as the lab tested. So you can see why compared to my results (although everyone is different!) your mother doesn’t really look hyper. Take a look at the hyper symptoms here on the TUK website and see how they relate to your mother - I had pretty much all of them other than some of the eye disorders (I had a few of them but not full blown TED ) and the menstrual disorders - I was way past that stage in life.
Thank you for sharing your symptoms and journey with me, I sincerely appreciate it. I know my mum had, and maybe still does have and just does not tell us, the pounding heart, which lead her to believe she was having a heart attack. I wondered why the doctor kept checking her eyes and made her stretch her hands outward. Now it all makes sense. I am sorry you have to go through this with the others on this forum. I know for a fact it is not easy as my mum is the strongest woman I have ever met, and age is just a number, but this has thrown her for a loop. Especially since she has had so many tests and they keep changing the diagnosis. I wish you and yours all the best and I thank you again !
You are entitled to a seciond opinion just go back to your GP. Ask for an endocrinologist experienced in hyperthyroidism ( many endocrinologists are diabetes experts )
I think she should be being subscribed carbrimazole after a blood test not removal of the thyroid cancer but best to double check this with a second opinion from a qualified endocrinologist
Best wishes
Ps I didn’t mean to put thyroid cancer - that’s my predictive text
It wouldn't be a good idea for cat_nb's mother to go on carbimazole with results like the ones that have been given. They would just lower her Free T4 and Free T3 further still and make her feel worse - and they are already in the lower half of the reference range.
Humanbean, not to worry, I don't think she is going to do anything right now until we get a copy of her file and as long as she is not having as many "bad" days. To be honest, even if she went tomorrow to see a DR to get that proscribed, they wouldn't. They would tell her she would have to go see the endo again and he certainly will not do that as her only options were do nothing, surgery, and kill it. I asked him if she could be prescribed a pill to regulate her "hyper" and he said no. My mother also asked him if she was considered "hyper" why couldn't they give her another small dose of radiation to make her thyroid closer to "normal" and he said, because we don't do that. The only thing we do is kill it and then wait a couple of weeks and then you will become hypo then we treat the hypo with medication.
Thank you Gravesclair, I sincerely appreciate it. We are going to try to find her a new GP, one that does not have their head stuck up their..... But in the mean time, we are currently waiting on a copy of all her tests, because at this point we are so confused. The specialists that they refer you to do not take time anymore to review a patients file before they see them. So from our experience, they tend to just throw things out there to scare you into treatment and then become irate when you question them. The majority is "my way or the highway" and refuse to work with you to do further testing as they consider you a "difficult" patient and do not want to "deal" with you anymore. The just can't wrap their heads around the fact that you actually question them and are taken aback that you will not just bow and take their treatment. They tend to forget it is your life and your body and you have been living in it your whole life, so if you say there is something wrong, you and only you would know. However, if the tests come back negative for what they "think" it is, they just tend to stop and say it is, even though it isn't.
Thank you for the information Saz I sincerely appreciate it! I am sorry I didn't get a chance to write sooner, but I have been busy.
I congratulate you on following your dream and becoming a doctor ! Just stay true to yourself and for goodness sakes treat everyone as if they are your family Maybe you are leaning towards a specialization in endo, wink wink
I appreciate that it can be hard to detect thyroid issues in older patients, but in this day and age with all the technology with the steady increase of thyroid diagnosis's, you would think that they could come up with a better way than, in my opinion, just guessing.
This coincides with any diagnosis. From our experience, the doctors do not care anymore.
All they seem to be in it for is for the almighty dollar. It may be different on your side of the pond, but here not so much. They just rush patients in and rush them out prescribing pills as the fix all for your symptoms and never explain what the side-effects they could create and regardless if they interact with other medications.
I am not here to bash the medical doctors in general, I just came here to see "real reviews" from everyday normal folk that has been through this and is still going through this. I wanted and still want to get my mum the "best of both worlds" so to speak. Let me be as clear as I can be ,as everyone else, I want my mother to live forever and she will, but I also want her to have all the information she can have to make an informed decision for herself without being pressured or intimidated by the medical field. She has already had doubts as they keep changing her diagnosis from first a blood clot, then to everything was great with her heart except plaque normal for her age, to she needed high blood pressure pills and cholesterol pills, when her levels were not high to this last specialist, that promised her he would find out what the "underlining " issue was which was short lived.
To be clear again, as the doctor so eloquently put it, I do not want my mother to do nothing if her choices are to have a heart attack or stroke and I am not on this forum for someone to diagnosis my mum. I just wanted feedback from those that are suffering and are going through the same issues she is facing right now and to see if the test results were similar so we could compare them to hers and do a little "internet doctor" research on our own. Also, P.s she does not have angina, the endo said she did and when I denied that she was ever diagnosed with it from the cardiac surgeon, he back peddled and said.." well if you do not kill your thyroid, it can lead to it"
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We have requested a copy of all her files. Unfortunately here you can get them but you have to pay $0.25 per copy. Crazy I know, but that is how they do it, I am wondering now if it is to deter people from requesting a copy of their files. I tend to agree with you, because they would be caught with their "pants down" again with my mother's health. I think that why he tried to be so intimidating and rude towards my mother trying to make her sound stupid for even questioning his diagnosis, and asking for alternative treatments other than killing her thyroid. But she and I are a lot alike, we are silent little lambs with a tough hide that takes a lot of hits for a long time until we snap. 
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